Monday, 13 November 2017

I include
this stat in my dementia training for health and social care professionals,
which might seem strange since many social care staff that I train and mentor
are working in care home environments, but this one statistical sentence opens
up so many extremely interesting discussions about the role of ‘home’ in our
lives, the links to independence, choice and control, and the feelings and
emotions evoked by ‘home’.

The
role of ‘home’ in our lives

Why
such an overwhelming number of people would want to remain at home is
unsurprising. Our homes are meant to be our place of safety and security,
places we personalise, feel comfortable, where we can truly be ourselves and do
as we want.

So what about the 15% of people who don’t necessarily want to remain at home - do they not
have all of those feelings about their home? They may well do, but those
feelings are possibly tempered by concerns about family members providing care
and support, or the person is living alone and considering a communal home due
to fears about isolation and loneliness.

‘Home’
is a really interesting concept in dementia care. As a person’s dementia
develops, the role of the person’s home can change: The person may form an
attachment to their home that becomes overwhelming to the point that they won’t
venture out, if the person does venture out they may not be able to find their
way home again (even if they’ve lived in the same neighbourhood for many
years), and sometimes home can become an alien place that the person no longer
recognises, even though nothing has changed in numerous years.

Home,
in the person’s mind, may become somewhere they lived in their childhood or
earlier life, which could lead the person to go out to try and find that home
again. “Please take me home,” may also be a frequently used phrase if the
person is somewhere they don’t recognise, like a hospital, care home, or their
own home that simply doesn’t feel like theirs any longer.

When
‘home’ is the problem

Often we
assume that so long as the person remains at home, being part of that 85%, they
will cope fairly well with their dementia. Yet the person’s home, for all its
perceived familiarity and comfort, can sometimes unwittingly contribute to
symptoms like disorientation and frustration.

Environmental
changes are rarely high on the priority list when families are caught up in
thinking about the person’s immediate care and support needs. Sadly, the
knock-on effect of this lack of environmental awareness is family members, friends or neighbours gradually doing more and more for the person (and/or a crisis occurring), which
can negatively impact upon those providing unpaid care and is even worse for the person with
dementia.

•Word and picture signage to
help the person navigate around their home, and instructions to enable the
person to operate household items (or even just to be able to make THEIR guests a
cup of tea rather than the guests taking over and doing it themselves).

•Clear door and drawer
fronts so that the person can see what is inside a cupboard or drawer.

•Colour contrasts across the
home but particularly in the bathroom so everything isn’t white.

•A layout that reflects how
the person currently moves around their home, and changes as the person’s needs
change - for example, you might remove internal doors to avoid the appearance of barriers or the fear of what is behind a door when it's shut.

•Technology that helps to
support the person’s independence - a dementia clock, for example, could help the
person know what the day/time is so that they can orientate themselves.

•Accessible and enjoyable
outside space - for many people, this aspect of ‘home’ is more important than
the building.

When
‘home’ moves

So what
happens if there is no option and ‘home’ has to change? Care homes are often
seen as prisons, but your own home can equally become a place of confinement, which has led me firmly to the
belief that what imprisons people with dementia isn’t necessarily buildings, but the attitudes of those around them.

That
really gets to the heart of why I talk about that Alzheimer’s Society statistic
so much. I want staff to be challenged to think about what home really means
for each person they are supporting, and to think about anything and everything that we can do to make the person’s current circumstances, which may not be of their
choosing (my dad certainly wouldn’t have chosen to go into a care home) the
very best they can be.

That
last point is vital, because for everything that I’ve said about the building
and contents that we call ‘home’, it’s the feelings and emotions that come from
the people a home is shared with (a childhood with parents and maybe siblings,
a young adult life as a newlywed, or the home where a person brought up their
children) that make up the ‘sweetness’ in the title of this blog.

In those bygone days the
building itself wasn’t necessarily the safety and security, that came from the
person’s mum and dad, husband or wife. The comfort came from the cuddles and
love that was shared. The fun came from the laughter and mess of a young
family. The personalisation came from choosing furnishings and decorating as a
young couple, and the freedom to be ourselves came from being completely at ease
with those the home was shared with.

Whilst
that ‘sweetness’ may be associated with many years ago, we can ensure it is never airbrushed out of the person’s life today. After all, would you want your
‘home’ lost forever?

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.